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Saturday, May 27, 2017

In case I’d forgotten this was
Memorial Day weekend, I was reminded by the bumper-to-bumper traffic in town
yesterday. Our town sets between Kansas City and the Lake of the Ozarks so
every summer weekend we are in the cross-hairs of tourists. Memorial Day and
Labor Day turn Limit and Broadway into parking lots.

I don’t suppose most of those
people are headed to cemeteries to decorate graves of loved ones. Decoration
Day was established to honor Americans who died in wars, but has evolved into a
weekend of fun in the sun and store-wide “Memorial Day Sales!” Yep. The way to honor
those who made the ultimate sacrifice is to celebrate and buy bargains. Memorial
Day is most definitely a red-white-and-blue day right down to sales ads for
clothing, hardware, lawn furniture, and every other consumerist purchase
possible.

I remember when as a working person,
Memorial Day was the first official holiday of the year. I admit that after our
annual run to place flowers on the graves of loved ones, we spent the rest of
the weekend pursuing some sort of fun activity.

Now, the highlight of Memorial Day
is to attend the ceremony at the Veterans Cemetery in Higginsville and place
flowers for Jim in front of the columbarium. Many of the graves at the cemetery
hold the bodies or ashes of those who died fighting for this country. Others,
like Jim, didn’t die in the war, but as one veteran said at a Vietnam program, “I
died in Vietnam; I just didn’t know it.”

That’s what happened to Jim. Taking
human life stole part of his soul and left it lying in the jungle beside the
fallen. His life was never the same after he saw the lifeless bodies taken down
by his M16. Jim had PTSD before we knew it even existed. When dementia faded
his short-term memories, Vietnam clamored to the forefront of his mind.

Did you know that 3:00 p.m. local
time is set aside on Memorial Day as a national moment of remembrance? At the
appointed time on Monday, pause, remove your ball cap, and bow your head for
the 1.1 million American soldiers who have died for this country.

Maybe a fun-filled weekend is the
way to honor those who made the ultimate sacrifice to keep this country free. It’s
a time to think about what is right about our country instead of what is wrong.
This patriotic weekend is a time of remembrance. The most important thing we
should remember is that our freedom wasn’t free.

Friday, May 26, 2017

The 2017 Greater Missouri Alzheimer’s
Association’s roast was a roaring success. I can’t help but think a person must
be quite comfortable in his skin to allow a group of people to “roast” him. Or
as the emcee, Bob Pugh put it, “sear him” on first one side, then the other,
before roasting him to well done.

I was assigned a seat at the “Hawk”
table along with my new friend, Kathleen. We were glad to see each other since
we were the first two at the table, and both of us wondered if we’d be seated
by anyone.

“Are you a Hawk?” she asked me.

“No,” I admitted.

We wondered what a “Hawk” was. “Well,
if they don’t show up, we can eat their desserts,” she said. We were joined by
a charming gentleman who said he was not a Hawk, but eventually, the Hawks
joined us—a husband and wife team. Everyone else at the table personally knew
the roastee, Mark Fenner, CEO of MFA Oil, which made the experience even better
for me.

Mark and the roasters looked quite
dashing in their purple tuxedos. The evening was filled with good-natured
ribbing, including Mark teasing a donor for selling a $10 million business, but
donating “only” $25,000. The roast was topped off with a guitar and a
sing-a-long.

Laughter as a benefit correlates to
the benefits of laughter. I can’t think of many people who need laughter more
than caregivers. The health benefits of a good chuckle cannot be taken lightly.
According to Mayo, laughter is the ideal stress buster.

·Improves
cardiac health. The American Heart Association believes humor can help your
heart by reducing artery inflammation and increasing HDL cholesterol. We have
good and bad cholesterol. The easy way to remember which is which is “H”DL is
the “happy” cholesterol and “L”DL is the “lousy” cholesterol.

Laughter is good for body and
spirit. It gives you short-term and long-term benefits. Having a good laugh every
twenty-four hours is just what the doctor ordered!

I easily stored up a week’s worth
of laughter at the roast. It was good to spend an evening with long-term
friends I’ve met over the years, and with new friends I met for the first time
at the roast.

I can’t think of a better
fundraiser than one that is fun. Beneath the laughter was the serious business
of raising money to provide our chapter’s outreach and to laugh our way to a
world without Alzheimer’s.

Thursday, May 18, 2017

I was carrying my Mother’s day potted
dahlia up the deck steps when I tripped on the steps and fell. I smacked my
elbow, knee, and scraped my foot.

It was a little shocking to find
myself down, but I dusted myself off, moved my limbs without pain. It seemed
the only visible damage was a toenail torn halfway off. I was luckier than my
sister-in-law who had fallen over the weekend and fractured her hip.

Unfortunately, I had landed on the
plant, crushing the plastic pot and breaking off a few of the flowers. We
re-potted the plant, and I believe it, too, will recover.

These two falls made me think of
all the times Jim fell. As I worked on his memoir Indelible, it became apparent to me that he had fallen more times
than I remembered. None of Jim’s falls resulted in broken bones, but he often
had bruises, swelling, and cuts that had to be stitched.

Jim’s main problem seemed to be
balance. After several falls, he eventually used a merry-walker, a device that
looks much like a baby walker for adults. He even managed to flip the
merry-walker from time-to-time and the nursing home weighted it down. At one
time, he was falling out of bed, so they placed it on the floor.

Up until the last several months of
Jim’s life, I was able to take him for walks. I held onto him, and he seemed to
do pretty well. Once he began to tilt his head back most of the time, I had
more problems keeping him balanced. Eventually, our “walks” involved pushing a
wheelchair around the parking lot.

A myriad of problems associated
with dementia can increase the risk of falling. Dementia causes problems with
balance and gait, confusion, vision and perception, and, of course, the ever present
medication.

According to the CDC (Centers for
Disease Control and Prevention), nearly 32,000 people died from unintentional
falls in 2014. Injuries from falls are the most common accidental death for
older adults.

Six out of every ten falls happen
at home. NIH (National Institutes of Health) has some suggestions to make our
homes safer while we go about our daily activities. Slick floors and poorly lit
stairways are two examples of hazards.

NIH lists these factors that can
lead to falls: (1) loose rugs, (2) clutter on the floor or stairs, (3) carrying
heavy or bulky things up and down stairs, (4) not having stair railings, and
(5) not having grab bars in the bathroom.

If you want a to-do list:

·Remove safety hazards. It is easy to trip over
electrical cords, clutter, dog dishes, or small furniture. One time as I was
knocking down cobwebs, I tripped over a footstool.

·Improve lighting. Make sure bulbs are bright
enough that you can see where you are going. Have a lamp at your bedside, night-lights
throughout your home, and keep a flashlight handy.

·Install handrails and grab bars. Stairs and
bathtubs are prime spots for accidents. Having something to hang onto reduces
the risk.

·Move items to make them easier to reach. As a
short person, I applaud this idea. Almost everything is out of my reach!

Having a recent fall makes me more
aware of the danger. I had a really bad fall on ice one time and my first
thought was that I was going to die, my second thought was that I had “broken”
my head. Ice is another story for different season. For now, let’s work on
those indoor hazards that might catch us unaware.

Tuesday, May 9, 2017

Setting a goal is the first step to
success. If you don’t know where you are headed, you don’t really know when you
get there.

In the year 2001, our local Alzheimer’s Chapter Executive Director Penny Braun asked
if I’d like to go to Washington, D.C., to the Alzheimer’s Forum. “We’re asking
for research funding,” she told me. “The goal is one billion dollars.”

“Well, we need to find a cure, and I
don’t mind asking for a billion dollars,” I said with full confidence. It
wasn’t long before I discovered that research funding was way short of a billion
dollars. Alzheimer’s was pushed firmly to the back burner and funding was so
tiny it barely made a blip on the NIH budget.

So year after year, I packed my
bags and went to D.C. with that illusive billion-dollar goal in mind. I can
remember being challenged with, “And just where would we get that money?” and
“We can’t ‘earmark’ NIH funds.” We inched a little higher, except for some of
the tight budget years when we lost ground.

Things began to look up when the
National Alzheimer’s Project Act was approved in 2010. This act required the
Secretary of the Department of Health and Human Services to annually update the
National Alzheimer’s Plan. The plan laid out a goal to prevent or find an effective
treatment by 2025.

The Alzheimer’s Accountability Act
of 2015 required scientists at NIH to submit an annual Alzheimer’s research
budget to Congress. This is known as a “bypass budget,” and it lets Congress hear what
scientist think should be in the budget for Alzheimer’s research to meet our
goals. They determined that if NIH invested $2 billion in research, we could
meet the goal.

It wasn’t easy to jump research funding
from the mid-millions to $2 billion. It wasn’t an easy sell, and it seems there
was always a medical crisis that got the billions to stop them while the five
million people with Alzheimer’s waited for a cure.

Alzheimer’s advocates are
determined people! Alzheimer’s disease costs our country $259 billion annually,
but research dollars have traditionally been tight. In 2015 (FY 16), we
received a historic $350 million increase. Once this increase was appropriated, the
annual research budget was closing in on the billion-dollar mark at $991
million.

In 2016 (FY17), the Senate Appropriations
Committee requested a $400 million increase which would bring our total to $1.4
billion. We celebrated with the appropriations chair Senator Roy Blunt at the
2016 Alzheimer’s Forum.

Then, this year, we received the
bad news that NIH’s overall FY17 budget would be cut, and our historic increase
was in jeopardy. We knew we were fighting an uphill battle to reach our goal.
We weren’t sure if we had been successful, but our champions vowed to fight for
us.

Once the budget was approved, my
inbox was filled with “hip-hip hoorays” as Alzheimer’s advocates cheered the
success of reaching our research goal.

In his letter to advocates,
Alzheimer’s Association CEO Harry Johns said, “This has been a historic week for the Alzheimer’s
Association, the Alzheimer’s Impact Movement (AIM) and our cause. As you know,
on Monday, congressional leaders from both parties and both houses of Congress
announced that the 2017 federal government funding bill includes the largest
increase in history for Alzheimer’s research, $400 million. Today, the
president signed that increase into law, bringing Alzheimer’s research funding
at the National Institutes of Health (NIH) to nearly $1.4 billion.”

First goal reached (around at least
since 2001): research funding of $1 billion. Next goal: finding a cure by 2025,
or sooner! The sooner, the better. Keep an eye on the goal.

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This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

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